Wednesday, April 27, 2016

Ava and Gwen had the best time making s'mores in our fire pit. I am thankful tonight that she tells me she is a happy kid.

These days anxiety is setting in hard and fast as I see the suffering of those I love. I think of life without Ava and my throat closes up. It's been hard to physically take in a breath this last week.

Tomorrow (Wed, April 27) Ava goes in for her PET scan to see how well this round of chemo worked. If all is well, she will continue with the next part of treatment which is the skin radiation. Then we are headed back to Seattle for a second transplant. She has been complaining of pain in her shoulder. This is where there was a chloroma before so it's not good that she is feeling pain there...hopefully it is a strained muscle. But, by now, we know that pain always leads to not the greatest discoveries.

Please, if you could pray for a clean PET scan tomorrow (Wed April 27) we would be so thankful. Also please remember my friend Jai and her daughter Allistaire in your prayers.

Monday, April 25, 2016

My friend Jai, she is amazing. The full confidence she has in Jesus is a testament that when things fall to crap, we can still worship. She was the one I was counting on to write a tribute for Ava if the time came to say goodbye to my sweet girl. How many did Jai have to write for Allistaire's friends that have died over the years? One too many...just so very many. And, now, I am here struggling through my words to honor precious Allistaire. Because it is impossible to encapsulate the very bright life of this child in mere earthly words. I met my friend for the first time in November 2014. We had settled down into our Ronald McDonald room in the basement of the building. All the donated toys and books were put into the cabinets by the bed. The groceries were stored in the mini fridge and cupboard assigned to each family in the public kitchen. We had picked up all of Ava's meds which meant that our small table was filled with drugs that we were to parcel off into exact measurements for morning, noon, and evening doses. Then the counting down of days before transplant began.One night, as I laid awake agitated by the unknowns, I perused Facebook and stumbled upon Jai's blog. I was captivated by her words: all the imagery, the smart explanations of all the treatments, her whole hearted worship to the Lord. I felt an instant connection to this mom I had never met. "She would understand this vagabond life, this wretched reality," I thought. I wrote to her that night and told her what an encouragement her words had been. Within weeks, she made time to meet with me. That is when I first met Allistaire.We met at the Starbucks in the River Entrance at Seattle Children's Hospital. We had come to know that entrance very well. By then we had gone in and out of those automatic doors countless times and had mastered the maze-like path to the Owl elevators that could take us to the 7th floor, the cancer/transplant unit. I was really nervous that morning as I awaited, in anticipation, a friendship that I so desperately longed for. Little did I know that there would be nothing to fear, that this sister would be as comforting and welcoming as coming home.In walked a mom holding the hand of a petite little girl with a fuzzy bald head. It was astounding how this blonde haired, blue eyed beauty looked so much like my Ava. Their chubby cheeks, their shiny bald heads, their infectious smile...Allistaire put on her headphones and cuddled into the leather seats to have some iPad time while her mama and I talked. And, boy, did we talk. We discussed our stories, our girls, our diagnoses, our homes, our fears, our faith. Allistaire patiently sat through hours of conversation totally satiated with her games and the comfort of her mama right next to her. We promised to meet again as we parted. It was only a few weeks later that we met in-patient at the hospital: Allistaire in one wing of unit seven and Ava in another. As soon as I knew she was on the floor, I flew over to her room to say "hello." I sanitized, gowned up, and slid open the glass door that kept out all kinds of unwanted germs. There she was on her bed, cute as a button, diapered up, coloring away. Now that I think of it, most of my interactions with Jai and Allistaire happened in a sterile field. Gloves, gowns, doors, and masks stood between us and them, always careful not to spread our germs or to bring anything back to the girls.Our whole friendship, the girls never actually got to play. What an odd childhood, where you might meet and greet a child your age from three careful feet apart, wave hello, and then never be allowed to play with one another. How enticing it must have been for them to want to interact given that they were so similar: the same bald head, the same Hickman line, the same precautions to take. Perhaps a game or two of make-believe would have been all it took to cement their camaraderie.Then another time we waved hello from opposite sides of the glass doors of our room as Allistaire sailed past on her pole. She sat on a wooden platform that fit right over the bottom of the pole so that she could be near all the flashing machines that represented life and, at the same time, bondage with all the wires that wove from the machine back into her body. Many hellos and goodbyes were exchanged as one child came in-patient and another was discharged. They could have been great friends, I thought on so many occasions. If there might only have been a day when they were healthy enough to play with each other. But it did not matter that we did not know Allistaire as a playmate because my girls knew her in prayer. Not a night would go by, without our family praying for Allistaire. "Please help Allistaire," they would pray over and over and over again. Somehow the bond that is formed in war, in the bloody spiritual warfare that we encounter on our knees, is a strong one. Though I have no earthly sister, I have many spiritual ones and I count Jai as one of my dearest. She has heard words of utter defeat and such wretched despair come from my lips. She has heard of the tippy tip highs of Ava's remission, to the very deep slopes of relapse. We have exchanged texts and messages and phone calls in disbelief at what cancer has done to our girls and in praise for what God continues to do through it all. She has spoken words of truth and light into such darkness in my life. We have clung together to the hope that we might see our daughters go on to live abundantly: two bright stars burning bright for His glory.Now, here we are. Allistaire is home on hospice after four long and, yet, such short years of battling Acute Myeloid Leukemia. This is the valley low. This is where we recite Psalm 23, envisioning it clearly, asking for mercy, mercy, mercy. "The Lord is my shepherd; I have all that I need. He lets me rest in green meadows; he leads me beside peaceful streams. He renews my strength. He guides me along right paths, bringing honor to his name. Even when I walk through the darkest valley, I will not be afraid, for you are close beside me. Your rod and your staff protect and comfort me. You prepare a feast for me in the presence of my enemies. You honor me by anointing my head with oil. My cup overflows with blessings. Surely your goodness and unfailing love will pursue me all the days of my life, and I will live in the house of the Lord forever."

There was a day in March, when all was said and done with Ava's chemo. She sat in-patient for a separate infection threatening to beat her down. The doctors came in and examined her. They saw the unmistakable bulging mass in her cheek. "It looks like a partial response," they said with sad eyes turned down toward the floor. Partial response meant that the road was slowly coming to an end for Ava. A partial response meant a no-go for second transplant. It meant that her cancer was likely terminal.

I went down to the chapel, the very same place where Jai and I once had prayed with tears, pleading with God for our daughters. It was quiet in there and I sat in the peace of that sanctuary. Then the tears began to fall and soon my body was wracked with sobs arising from a deeper part of my being. I felt the urgent need to talk to someone, to anyone about this visceral pain.

Next door was the chaplain's office and I tentatively knocked. An elderly chaplain opened the door and invited me in. With tissues in hand I shared about Ava and the dire situation she faced. "She may die," I said. "And I do not know how to do this." He listened with such softness and grace. Then he told me an analogy that I would never ever forget.

"It is like childbirth," he explained. Oh, that one sentence sent me hurtling back to Ava's birth. There I was in the hospital room, 12 hours after my water had broken. The doctor was so mad. "Your water broke and you waited too long," he scolded me. It was true, my water had broken at midnight the night before but it was my first birth and I didn't realize it. By the time I called the doctor in the morning, too many hours had passed without the bag of waters protecting my child. I was immediately hooked up to Pitocin to start contractions. The first hour or so I breathed through them eager to stomach the pain. I was offered an epidural but I though I could wait a while longer. By hour three I was desperate for something. The Pitocin caused the contractions to layer one on top of another so that there was no break. I began to shake and vomit from the shock of labor. I begged for the epidural. "It's too late. You're almost fully dilated," the nurse told me. The next hour was filled with unspeakable pain, too sharp and shattering for words.

Then, it happened. I pushed three times and, as I screamed through the ring of fire, out came a being so extraordinary that our lives were forever changed. The pain had produced such beauty that we were left speechless, mouths formed in an O, tears in our eyes. We celebrated that life, that child, that miracle for seven years now. When I asked Mike what the birthing process looked like he told me it was a war zone. "I wish I could have seen it," I said. He turned to me and said, "Believe me, Esther. It was bloody and gory...it was nothing you'd want to see."

The process defies the end product. You could never predict that the pain coursing through your body could produce the most awe-inspiring splendor as God salvages the destruction of sin.

That is how it is when guiding your child through death, I imagine. It is an agony that is best conveyed by shuddering and a groaning of the spirit that can not be quenched by anything in this world. It is vomiting and shaking from the shock of what is to come. It is the weight of grief so heavy as you long for time to freeze so you might never let go of the soft bundle that is your child. It is the depths of sorrow so bottomless as you wake to the reality that this world will not know her. It is the process and pain of labor so intense that your insides twist and turn and your breath catches as the contractions grow. As your child inches toward heaven, your whole being throbs with the cut of a thousand knives. And then it is finished and your child is born-again into the heavenly realms. The angels rejoice and the Lord, himself, will scoop her up and show her a vast kingdom where her soul can rest. And, at last, all the suffering of this lifetime will be redeemed forever.

We don't know what heaven looks like but I have been gathering up the best places on earth in order to envision the place where our sorrows will be no more. Will this place, where we may send our babies before us, truly be better than our embrace? Will it be beautiful? Will it truly hold no more tears?

I see mountains with snow capped peaks and endless green pastures. I see exquisite flowers of every color bursting from the soil. I see a river running through the meadow, trickling over sparkling blue-green stones. In the distance, I see a city blazing from every color ever created and a path of gold leading to and from. I see a grand tree firmly planted by the clear stream, branches heavy laden with delectable fruit. I hear children laughing and playing, throwing all caution to the wind. And I see Jesus in the middle of it all, taking each child by the hand so that they would never fear again.

Allistaire Kieron Anderson

You may run through those grassy fields and take up in your arms a bundle of flowers for mama. You can run forever without the faintest whisper of pain. Dip your toes in the cool stream and delight in it. Lay your head in the soft emerald pastures and listen to the angels sing. Play and play to your heart's content. Let your giggles and your laughter be heard as you sit at Jesus' feet and He calls you by name. "Sapphire, come," He may say for He knows our deepest desires and our most sacred secrets. Then, after a few moments, when you have drunken in all the glory of heaven, just as you search for her you will turn and see your mama there to take you in her arms again.

You have been like a star, created for His glory. You are a light to point us in the way we ought to go, a beacon that sends us barreling toward home. When stars burn bright, it is so breathtaking, so beautiful.

You are so breathtaking. You are so beautiful.

While some may have 90 years, you only had six. But every year of it was written down in His book, celebrated in the heavens, and treasured by those who knew you on earth.

Precious child, sweet Allistaire, your life has made a mighty sound.

You may read more of my sister's story and pray with me that her faith would not falter even in a time such as this. www.conglomerationofjoy.com

Friday, April 22, 2016

We were told today that only a handful (like 4 children) are documented receiving TSET, total skin electron therapy. It's because it is really hard to do so most centers won't preform it on children.

All the equipment you see has been special ordered or specially made for Ava. This team has worked together for weeks trying to make this therapy available to her.

During the dry run, she had to put on lead goggles to protect her eyes. Not only was it disorienting and dark, it was also really scary for her. She started to whimper so we told her she was a super star.

"If I'm a super star, why can't I see? If I am a super star, why am I scared?" she said through her tears.

Walking out of the room, after all was said and done, Dr. John bought us coffee and donuts. His eyes were filled to the brim with compassion as he probably contemplated the lengths we were going to save our super star girl.

We know the chances are slim. We know that we may have to face unbearable pain in the future. But for now, we are so very thankful, so very humbled at the resources we have been given to try one more time.

Dear Brothers and Sisters,Good afternoon, and I hope you had a blessed week in Christ!

We took Ava to the Radiation Consultation yesterday, and believe that the original plan to move forward with total skin electron therapy followed by second bone marrow transplant is the best course of action to take.

We now know much more about what the radiation procedure entails. The practice sessions went well, and the team is confident Ava will safely cooperate over the course of this three week treatment. Her radiology team should be ready to begin toward the end of next week.

Thank you so much for your prayers. We had been very uncertain of this plan, but now have peace to move forward with it. It simply seems that God is faithfully leading us to take even greater steps of faith. For example, the renown Radiation Oncologist is right here in Chicago, who said that this procedure has been done for only four other children in the past. Ava is actually the only child who is doing it as a precursor to a curative treatment plan rather than for end of life (palliative) support. Even the side effects are unknown. Yet the treatment plan has been approved and Ava is at peace.

The original idea of returning to Seattle for transplant in Mid-May seems accurate. Until we begin the radiation, Ava will enjoy the outdoors and the special feeling of being home, which was a very pleasant surprise for us all. She went back to school today, and I heard it's going well!

I will continue to keep you updated, and please let me know if you have any questions at all about this or anything at all related to family and ministry.

Wednesday, April 20, 2016

Here I am posting one day late because I felt so slammed yesterday that I went to bed at 10:00 p.m. The girls were still up, probably high on cake, and I asked Ava to get Gwen ready for bed. Yes, I asked my seven year old to put the newly five year old to sleep.I just didn't have the strength required to see them through brushing their teeth, putting on lotion, changing into pajamas, reading a story, rubbing their backs...It seemed an impossible task to complete. My eyes did not even care that my request was so absurd. They did not care that I did not post something about Gwen's birthday--a post that I had already written, in my head, many times over the month, a post to document how incredibly proud and thankful I am of my resilient and joy-filled child.But my battered, bruised spirit required some rest. Emily, Becca, Nicole, Melissa, Madeline, and Allistaire...daughters who have died, a daughter now dying. I am silenced by the searing white pain of these words. It is a day to celebrate the life of my child, of five breath-taking and messy years with my girl. And, yet, my friend is biding the time, urging it to move ever so slowly, as she awaits the handing over of her daughter to a place she cannot immediately follow. This day, though a good day, has been a heavy one. It is hard to carry such sorrow even while traversing some of the most beautiful moments in life. This is the mom Gwen has today. Sometimes I wonder if it is enough. I question how this time in our lives will affect Gwen in the future. We know what is to come for Ava: learning disabilities, infertility, stunted growth, delayed puberty, possible baldness, forever dry and cracked skin, and possible malignancies that may claim her in the prime of her life.But, Gwen, what about her? She was two years old when Ava was diagnosed with cancer. Fifty-one days later, with a small, muted party, she turned three. There she was a small, bright, wild flower still blooming amidst the gray all around. Most of my memories from the first week of diagnosis are a blur but I will never forget the day Gwen came to visit us at Lurie's. It had been several days since we had last seen her. She went from sleeping in small quarters, snuggled up near sister and mama and daddy, to being alone at night. My mom brought her to Ava's hospital room and I took one look at her and wept. She was wearing pants too short for her little legs, her eczema was out of control, and her nose was full of small hard boogers, all evidence that she needed me and I was not there for her.Over the last few years of Ava going in and out of treatment, hair falling out and growing in again, time measured by procedures and relapses, somehow Gwen has continued to thrive through the dry and cracked soil of this season in life. She is bright and wonderful, emotional and raw. She reaches up during Sunday worship, eyes searching mine. If there are tears, she quickly wipes them with her baby hands, softly poking into my eyes to see if there is more. At home she has learned to tuck away into her imagination and play by herself when sister is at the hospital and there is no one left to play with. She still races to be first and to win and struggles with her desire to get more than she gives. But when it is required, when she sees that it means so much to sister, she will concede it all for the sake of a smile. She will squish her face into brother's and kiss and kiss until he screams. "HE'S SO CUTE!" she will cry out as an excuse when we've reprimanded her for being too rough. There are days when she must feel neglected. Our attention is turned toward sister who is very, very sick. Our arms are busy holding baby who is very, very needy. "Hold me," she cries. And we cry with her because it is hard to be in the middle. We are exhausted and stretched so sometimes the healthiest child comes last. We know she must suffer so much in that quick and smart mind of hers. Her thoughts must constantly churn trying to make sense of this world and of her life before and after cancer. But we long for her to know that her life means so much to us. It is hope that there is goodness still left after desolation. It is truth that God does not make mistakes. It is faith that love will not be crushed under circumstances but that it will flourish despite it all.Gwen, You will read this blog one day. And you may wonder what part you played in our story. I want you to know that although your name was not plastered all over these pages, you were a central character. You held such an important role. Your joy was the glue that bound us; your smile was the reason we got up day in and day out. Your new words, new creations, new discoveries were what marked the years for us. Life was worth living because your spark ignited in us the desire to go the distance even though the race was fraught with thistles and thorns. I want to wish you a very happy belated birthday, my girl! You turned 5 yesterday. How is it possible that another year of life has come and gone with such sweet kids by our side?

A recent conversation had Ava wishing she didn't have cancer, just like you. You turned around and said you wished you were Ava instead.

"Oh, Gwen, you should never wish to have cancer," I said, thinking that you were coveting the attention that Ava receives.

After a short, confused pause you replied, "No Mama. I wish I was Ava so that she won't have the cancer and I could take it instead."

My heart is humbled that instead of building up bitterness that much of your life has been shrouded by Ava's cancer, you have learned deep compassion allowing love to heal over so much brokenness.

"Last year, we celebrated Gwen's birthday in the midst of Ava's diagnosis and this year it is shrouded again in Ava's illness. But this girl, she smiles. Boy, does she smile bright and it shines a light into the darkest tunnels of pain and grief. So we continue to celebrate life because what is living if we don't revel in the small things like love, laughter, parties, and Hello Kitty."

Gwen is Five!

A belated wish for the sweetest girl. It is another year of fighting for Ava's life. Yet, she takes it all in stride and prays that "Ava's line would be removed and cancer be gone forever." Amen and Amen. God, thank you for my girl, Gwen.

Sunday, April 17, 2016

While many of us have the privilege of tucking our children in for another night, after another day of normal bliss, my friend faces the beginning of the rest of her life without her precious one.

This is the end we have prayed against since the beginning of diagnosis. This is the cup we have asked the Lord to remove. Yet, in His sovereignty, He has called Jai to it. He may call Mike and I as well.

If you have known the joy of being a mother or a father, please extend yourheart and your hands toward my brave and godly friend, Jai, and her sweet girl, Allistaire. We pray radiant peace in her passing and great grace upon everyone who is left behind.

Maranatha Lord. Come quickly for us, the broken-hearted.Please read www.conglomerationofjoy.comand be encouraged by my sister's faith, and pray for their family during this desperate time. I ask that you not visit her blog unless you commit to praying for this family. Her words and her daughter's life deserve much honor. If you could please extend your respect and love by praying tonight, this minute, for Jai's family I would be eternally thankful.

Friday, April 15, 2016

It's 2:56 a.m. CST.There used to be a time when night time was the best part. I could snuggle under the covers and let my body relax into the the soft and slumbering forms of all the good in my life.Yesterday I dreamt that we were in a new house. I looked through the rooms anxious to see if there was a space for Ava. And there was! One room had her bed, her things all laid out the way she would have wanted. For a moment I allowed myself the joy of imagining life with her in it. It has been so long since I let this thought come and stay for a while. But there's also the recurring dream where I am in a building with many stairs and hallways. We have to get out but we don't know the way. Every door has the potential of being the wrong one. We are trapped and alone. We are trembling in fear.Nights like that happen more often. It jerks me awake and I reach for her to see if she is there. I can only rest after whispering into her ear enough "I love you's" to elicit one back. Then I can be sure that I am not dreaming. She is really here beside me, breathing in and then out, all proof that her spirit is still very much on this earth with us. But I imagine a time in the future, when living becomes the actual nightmare...when night and sleep and dreams cannot come fast enough and does not last long enough. Yesterday, Ava went to the hospital for her last push of chemo. It was supposed to take an hour max. We were still in the infusion center at 8:30 p.m., the only patient left for the night. Ava's platelets and red blood cells had fallen and she needed to be transfused. Laying in that small hospital bed, after watching the 3rd movie of the day, Ava fell asleep from the Benadryl she was given to combat the allergic reaction she had to her blood transfusion. My own blood had begun to churn as I felt anger building up at being imprisoned in this sterile room. The nurses that were slow to get the order in for her blood and platelets had become careless prison guards. The medicine pole she was tethered to became her chains and the inability to enjoy the day like countless other children, her punishment.That same day my friend who had lost her son to cancer just 6 months earlier was celebrating his 4th birthday...without him there. As I posted to wish her son a happy birthday, I read a comment that made me stop and take a quick breath. "It is so heartbreaking...but at least he is not in pain anymore."Thank God that FB requires typing, and typing requires words to be formed and fingers to move, and that requires time. Because time is what kept me from spewing back a slew of reasons on why the words "at least" should never be used when talking to a grieving parent. I don't want to sugar coat tonight. Cancer is the devil, this world is broken beyond repair, and the pain of losing your child is as close to hell as any believer will get to the actual place.While I was laying in that hospital bed with Ava, a text popped up from my dear friend in Seattle, Jai. She was one of the first cancer moms I met when Mike and I were still shell-shocked parents numbly getting Ava ready for transplant. We shared about life over a cup of coffee. We got real, real fast. There's nothing like kids dying to get you to shed off years of facade and just get down to it. We shared our stories, our hearts, our tears. She ministered to me in ways that no one had been allowed to until then.Her text told me that her daughter, Allistaire, had relapsed for the 3rd time after her 2nd transplant and that the disease was spreading quickly. Her baby, the one she has fought for over many years, would now likely die from cancer. Her prayer request was simple. "Pray for my faith," she said. She asked us to share this request far and wide to any person willing to pray for a fellow sister in distress, in the testing of a lifetime. If you feel led, please turn your prayers toward my sister, Jai. Please storm the heavens on Allistaire's behalf. Please.We have talked often about how it is most likely that our daughters would die. Everything is stacked against them. Of all the types of cancers to get, of all ways the disease could have coursed, of all responses they could have had, our daughters have had some of the worst. But still, my heart wanted to hope. No, our daughters will live. I wanted to believe. But now this.

These are the years when our kids are still asking to be held. We are walking down the street and suddenly, they turn in toward us and step in front of our stride. "Hold me, Mama," they say. They look perfectly capable of holding their bodies up, they have been walking for years. But they'd rather be in our arms resting from the weight of the world, however light, on their little legs.God, our burden is great. Our legs tremble from the unbearable pain of watching our children suffer and then die: touching the prickly fuzz forming on their bald little heads, listening to wails and moans that our embrace cannot quiet. It is agony to know that there is the very real possibility of seeing them take their last struggled breaths of air, feeling their spirits leave their bodies, tasting the bittersweet truth of what death on this earth means, what life eternal means.Allistaire is everyone's child because cancer does not discriminate. We were not a cancer family up to the second before we became one. There is no sorrow greater than losing your child. If there were, I believe the salvation story would have included it. But, no, the story of redemption and love holds the death of a precious son. God, you know this deep, searing loss.We don't know how to do this. We don't know how to not lay down next to our dying children and just die too. We don't know how to stop fighting. We don't know why this is happening. We don't know how it will end. We don't know how it will be redeemed.Yet we do know you, God. And I am asking, with arms stretched high, could you please hold us now?

Friday, April 8, 2016

Our friend, Marissa, was visiting Ava today while she got her chemo (Day 4-almost done. Yay!). She texted me this picture after she left and told me that she was at a super long red light when she looked up and saw this name in the sky. Wow. What a great reminder that God is ever present, even when the daylight fades to night. We pray for brighter days, more numerous than the stars.

Wednesday, April 6, 2016

Ava started chemo today in Chicago. The rest of us are still in Seattle getting ready to leave tomorrow. I found this picture and it brought me back to so many years ago when Ava used to be hospitalized for anaphylactic reactions and severe asthma attacks. We would grab her things, call 911, and be out the door with her teddy, Poby. He went everywhere with her but especially to the scary places like hospitals and ambulances. Over the years, he's been in CT-scans, PET scans, emergency rooms, sterile rooms, isolation wards, on gurneys, in hospital beds, in the operating room...

In those earlier years of her life, we weren't sure how she would survive her crazy allergies. But she did. And now she is allergy-free. Those of you who have watched as she was hospitalized again and again can attest to how miraculous this is for us.

In February 2014, Ava was diagnosed with Biphenotypic Leukemia, her cancer cells having characteristics of both ALL and AML. It is so rare that only 3% of all (pediatric and adult) leukemia cases fall into this type. They said her prognosis was poor. That was two years ago. She is still with us fighting today, Poby at her side.

After a successful transplant in 2014, she relapsed with aleukemic leukemia cutis almost one year out. The doctors said this type of relapse was not only rare, but really, really aggressive. Really. She's battling cancer for the second time, but now with a far more dismal chance at survival. Because relapse is bad, but relapse after transplant is worse, and relapse with leukemia cutis...well, that's just not fair.

Tonight, with Daddy by her side, and a whole world of people praying for her, Ava is going to kick some boo-tay with her first dose of her second round of chemo. Poby is still in Seattle with me due to a laundry mishap (as in, oops I forgot to do the laundry), but it won't matter. You see, Poby was my gift to her as a baby. A stuffed bear for my little bear. She doesn't have him right now but she has our love, all across these miles thinking of her, praying for her, loving her, wishing for her. That will be enough. Because Poby equals love, and we got that covered.#teamavabright #lovewillwin #pobyandava

Sunday, April 3, 2016

Yesterday was our last night together as a family in Seattle. Ava bravely made the trip back to Chicago with her daddy today. She wailed all throughout the airport. She said she couldn't do it without me.

"I'll be right behind you, Ava. I'll never leave you. I love you so much," I promised her as my heart weighed heavy at her distress.

There are days when I desperately want to lay down and give up. "I'm scared and tired. You're nowhere to be found and I need you more than ever. You promised to never leave or forsake me but why do I feel like you have?" I sometimes tell God.

I am Ava and He is me. Except His words aren't filled with fear that He won't be able to follow through. In fact, He paints the sky golden to show us that beauty can be found at the end of the day. He fills our bellies with warm food from countless friends we have yet to meet to remind us that we do not go alone. He replaces Ava's tears with giddy laughter when she finally arrived home to show us that there, too, will be an end to this chaotic chapter.

Tonight as I put only Jude and Gwen to bed, my heart gives way to a moment of panic. Is this what the future holds? Only two babies to love and care for when my body brought forth three...three souls.

I am hushed by His extravagant love. For who can deny that He has been good to us? So it will be in the days to come when we fumble around in the dark, we will see far into the horizon and watch as goodness soaks away the blackest of nights. And we will know that He is right behind us, never leaving us, always loving us.

These girls have done really well despite the adversity they have seen at such tender ages. The credit goes to all of YOU and to God. Because the love. Oh the love was incredible.

Ava and Mike are on a flight to Chicago right now. Gwen, Jude, my Mother-in-law and myself will be following on Wednesday. We ask for prayers for safe travels especially as it is incredibly germy in the airports.

Seattle friends- thank you from the bottom of our hearts for showing us that the body of Christ is very much alive and working. And thank you for the love; it has carried us far.

Chicago friends- we are coming home!!! Even though the main goal is to return to Seattle we are so grateful for a reprieve in the middle of this fight. Ava has quietly cried herself to sleep on several occasions because she was so homesick. Looks like God heard her tiny prayers. It will be good to see her alive and well in our house...it will actually be a dream come true. #weloveseattle#pippinherewecome

Saturday, April 2, 2016

Yes, you read that right. The Lees are coming back to Chicago. Ava didn't start chemo today as originally planned. She will return to Chicago to get her next round of chemo here in addition to radiation. Why?There are still a number of questions, variables and unknowns, so your prayers for God's wisdom and guidance are coveted in such a time. Here's what we do know:

Ava has had a significant decrease in her MRD, but the fact remains that disease is still present. While her response to chemo has been positive, she really needs to be disease-free in order to go to transplant, and that is the doctors' aim. This second round of chemo is to see if she can reach remission (MRD negative) to set her up for transplant.

Leukemia cutis can be very aggressive and hard to get rid of. The transplant team strongly advises that Ava also get skin radiation in addition to the chemo. It would be best for her to receive this radiation before going to transplant (vs. after transplant).

Seattle is in the process of being able to provide radiation, but aren't currently able to provide that right now. So either way, Ava will get radiation in Chicago.

Since Ava really wouldn’t be in any condition to travel after chemo starts, she is coming back to Chicago to receive both chemo & radiation.

The round of chemo runs 3.5 weeks or so, and radiation is close to 4 weeks. They don't want to do chemo and radiation consecutively (i.e. complete chemo first before doing radiation), because they run the risk of Ava's cancer growing unchecked without chemo during the 4 weeks she is getting radiation. This is risky if they want her to be disease-free before transplant. So, the thought/hope is that Ava can receive chemo and radiation concomitantly, at the same time.

However, it is unclear (to us) whether this is a good idea – can Ava's body take that kind of treatment? We don't know. It seems that all the doctors are a bit unsure as to the best treatment plan, so your prayers are especially appreciated and solicited!

What if Ava doesn’t reach remission after this round of treatment? What then? We don’t know. Should that happen, we'll have to reassess at that point.

Ideally, Ava would come back this weekend so she can be home briefly before starting chemo on Monday. However, last-minute airfare is really expensive right now, so Mike & Ava are scheduled to come home on Monday (4/4) and start chemo on Tuesday. Esther & the other kids will follow back home this coming Friday. Esther’s parents will fly back to Chicago in a couple of weeks.

Please pray:

for God's wisdom and guiding hand to be revealed in the coming days/weeks regarding Ava's treatment and the timing and coordination of everything. May God's will be done, according to His ways, His timing, His wisdom, and for His glory.

for smooth and safe travel back home for everyone

for smooth and uneventful treatment here in Chicago

for the abiding presence of His peace for the Lee family, despite the unexpected turns that may arise

for Ava's complete healing, should the Lord choose

Again, we don't want to pigeonhole God in telling Him how we'd like Him to work. God is much more creative and awesome in the ways He can orchestrate His amazing grace and unfathomable love in our lives. We trust in His unwavering goodness toward us. It is also this amazing love that allows us to approach His throne of grace with confidence, asking and seeking His intervention and help at this time.

Thank you so much for your prayers! We cannot underscore enough how much of a blessing you have been to the Lee family.